Updates, Updates - Part 3

Well, next up is my oldest son. At the wonderful age of 16 (going on 17), he is the wonder of the family. How he got here, please don't really ask me. I do not have a degree in child psychology or development. I probably made so many mistakes along the way. But you need some background...

It is a mother's instinct that knows something is not right with her child. He was my first, but it was my mother who began to point out little things only a month or two after he came home. I had seen it too, but didn't know what to make of it. He needed to be swaddled. He hated bright lights and hot environments. We could never find a formula he liked and he couldn't grasp breastfeeding.

By a couple of months, he was sleeping in the basement (yes!) in a stroller. No noises with the close walls of the stroller made him relax. I hated it. The empty bassinet with custom sewn covers sat empty next to my bed, while I listened furtively to a child monitor late into the night.

But it didn't take long for me to realize. This kid was like clockwork. In fact, by the time I went back to work when he was almost a year, I handed the babysitter several sheets of paper, outlining everything he would do.

When he pooped. When he ate. How hot the bottles had to be. How thick the formula had to be. When he would sleep. I stressed to her: keep to the schedule and you will have a perfect day. Don't, well, just keep to the schedule.

Now, she must have thought I was crazy, but after two days, she said incredulously, that she had NEVER had a child stick to a schedule so perfectly in all her experience.

He began to talk. Clearly, everyone remembers "tank you" and "pease" at just around 12 months. He walked on time. Everything was going well.

Then suddenly, he began to go quiet. He rocked a little. He stopped looking at you when you called him. Soon, he stopped responding at all. You had to go up to him and talk to the back of his head. After awhile, he flapped, sitting and rocking in a baby rocker he was way too old for. He never picked up any crayons, pens or markers and doodled. He played with the manual can opener. He became preoccupied with trains.

In NY, parents start their little ones off early. By 2 1/2, he was in a daycare/preschool. Within six months, he was out. Wandered around too much, they said. Just left in the middle of class. Nearly left the building. We were back to babysitters.

By 4, he only whistled, grunted and pointed. Growled when you couldn't figure out what he wanted. He wore the same clothes until I hid them and said I couldn't find them, hoping he would attach himself to something new. Went to bed like clockwork and woke the same way. There was no eye contact, no kisses and never a hug. No smiles. He was never aggressive or hurful. Just a little wandering robot playing with his fingers.

At this point, I have to interject that this was the lowest point of my life as well. Within six months, I would lose my job, my marriage, my parents (seven weeks apart) and come to realize that my boy may have something called autism, something I saw on PBS late one evening. Oh yes, and I was pregnant with my 2nd son.

I am going to fast forward through the really hard years, raising two chldren as a single parent for 10 years. My son not accepted in various schools for very long. He had such problems with sensory sensitivities-the bells, chairs moving, people scratching their pencils on paper-drove him crazy.

We moved twice, saw loads of doctors who spat out lines like jackpot slot machines. Lines like, he may never improve (remember this was '95-'96), he would need years of therapy (not covered by any insurances) and you need to get on this or that waiting list for services. And, oh yeah, file for disability. *Sigh*

I remember asking God for one thing. Give me five good years, Lord. Give me five good, long years, and I will prove this kid could learn.

We finally landed in Maryland in 1999. By this time, I had the single mother thing down to a science. And, I knew how to ask questions. "Where does everyone else go?" "Who has a good program?" We ended up at Kennedy Krieger. Test after test finally revealed a diagnosis. PDD/Austism. It would be several more years before it was upgraded to Asperger's Syndrome.

In between is a blur I don't completely remember. Every moment, I poured something into his little thin body and mind. Language, music, news, jokes, colors; anything that got him to make eye contact, make a sound, ask for something with words, we repeated over and over.

One story always sticks out. Sorry, I wish I could remember exactly how old he was, but it escapes me. I remember a class assignment on the number zero. The assignment sheet was a lovely scene of grass, rocks, clouds. The questions asked how many rocks, how many clouds and how many sheep. The correct answer was zero sheep. He kept shouting 5. Over and over again, I went through the explanation. Still 5. Finally, I said, "Well, if there are five, tell me where they are?" He answered, "one is behind a rock, one jumped in the water to get a fish, one wandered off to look at a buttercup (!!), and two went home because they were tired."

I remember staring. Then it hit me. He added! HE ADDED!! And, he talked in BIG, LONG SENTENCES!!!

So, I quietly asked, "If all that is true, everyone's gone. How many sheep are left?"

"ZERO," he announced confidently.

Just imagine so many more years of that, and you have an idea of what went on. Fractions meant measuring cups with food coloring and water. Reading literature meant acting out the scenes or searching the internet for related videos and pictures. Homework took hours, broken up into little chunks. Storytime was always punctuated with extra dialogue and sounds. So much so, he was disappointed when he finally began to read well enough to only discover that all that extra stuff was not written in there. Mommy made it up. It kept him focused.

This is getting long, so I won't go into having to bring an educational lawyer in so he could have an assistant from 5th grade through 8th. How I changed things constantly to build in a tolerance for sudden changes (no meltdowns now, just lots of questions! Why, why, why!) How we still struggle to find volunter work for his community servce hours needed in high school(he is still very reclusive, and it is harder now to break routines).

We have the help of our local DORS (Department of Rehabilitative Services). (DDA wouldn't touch him. Our case manager literally told me I did too good of a job) He will have a driving assessment in March, two weeks of career assessments in June and 4 months of living on their campus when he graduates (2010). We have a social skills group he can go to, but with his brother's illness right now, this, unfortunately, has had to take a back seat.

Today, he is a tall, lanky, talkative fellow. One who follows rules to a tee, never forgets his chores and loves animals (future career, we hope!). He will graduate on time with a diploma. He is on no medication (none were found to alter his behavior; we did do trials). He understands he has "something called Asssspergers (he thinks this is funny), but revels in being different.

He is my wonder. I marvel every day. And, thank God, for an answered prayer.